• KarenG_WN's Avatar

    Have you participated in a clinical trial? How did you find out about it? What was your experience?

    Asked by KarenG_WN on Tuesday, February 7, 2012

    Have you participated in a clinical trial? How did you find out about it? What was your experience?

    5 Answers from the Community

    5 answers
    • kdee7's Avatar

      No I have not participated in a clincal trial.

      about 9 years ago
    • Fusionera's Avatar

      I have participated in three clinical trials, the first in 1996 after my 2nd brain surgery. I took Temozolomide for 12 months when it was in trial, and at the time was really the only option open to me. I am eternally grateful that my tumor met the conditions for the trial and that I was able to participate. All three of them were recommended by my neuro-oncologist.

      The second trial in which I participated came in 2005 following my 2nd recurrence. It was an immune response booster called Poly-ICLC, which consisted of self-administered injections 3 times a week and having my blood checked weekly. My neuro-oncologist recommended this trial so we could see if something besides my old friend Temodar would work. While it did not require antinausea medication, I had to take Tylenol/Acetaminophen an hour beforehand to ward off the flu-like side effects. This drug did not work and by Christmas I had two tumors in the same area. I was taken of the trial and put back on Temodar to stabilize the tumors.

      Trial number 3 in early 2006 paired Temodar with an experimental drug called SAHA. By summer's end, both tumors had disappeared. I knew the Temodar would be tolerable, but the SAHA was more difficult. I gained a lot of weight while on this trial, just making sure I had sufficient food in my stomach to tolerate the SAHA. I definitely needed additional antinausea medications on top of my normal regimen.

      I am now on Temodar again following my 3rd brain surgery last spring. I will finish 12 months of treatment in July, just in time for my 25th HS reunion. I missed our 20th because of the chemo and at our 10th I had just finished the Temodar trial. I think I need a new story. ;-)

      about 9 years ago
    • po18guy's Avatar

      I received a "poor" prognosis in July, 2008, being diagnosed with a rare sub-type of aggressive non-Hodgkin's lymphoma (Peripheral T-Cell Lymphoma - NOS/Unspecified). Due to its rarity, there is no standardized treatment. It is highly resistant to chemotherapy, and cannot be surgically addressed or irradiated. By way of standard therapy, I received eight rounds of two differing regimens that involved a total of eight drugs. Against a 30% chance of responding, the cancer went into complete remission, but relapsed immediately. The prognosis dropped to "very poor." At that precise time (February, 2009) a clinical trial of a novel, non-chemo drug (Romidepsin, aka Istodax) appeared, intended for use against relapsed PTCL. I qualified and so signed up for the trial with Celgene, the drug's maker. The drug, as well all study-related activity (EKGs, scans) were provided without cost. The only cost to me was the "standard of care" which I would have required regardless of the treatment that I was receiving. Fortunately, private insurance covered that. The is administered as an infusion through the existing port in my chest. The study was well monitored and my vitals were checked both pre and post infusion. A complete blood count was run and I received EKGs before each infusion. My weight was also checked each time. I was scanned every two months, to monitor progress. A trial nurse, as well as an infusion nurse were assigned to me and I received regular doctor visits during infusion. Against about a 30% chance of responding, I achieved complete response yet again. The drug's side effects have been mild to moderate and were well-controlled with supplemental drugs, such as anti-emetics. After being on the drug for over one year, I stopped the anti-emetics and have had virtually no nausea issues. Most patients exhibited a median time of response of 13 months before relapse or progression. Amazingly, I have been receiving the drug for 35 months with no evidence of disease. I cannot say enough about the drug and the treatment that I have received. Without it, I would not have survived 2009. Indeed, for many of the rare and aggressive cancers, "clinical trial" is the recommended course - if one is available. Honestly, I formerly had a poor opinion of clinical trials, naively thinking that they were for those who were desperate. Then, it struck me: I WAS desperate! Since each and every drug that is on the market has had to go through the clinical trial process, I no longer have any disdain for the process, and I am alive because of it. I strongly encourage all who have few remaining options to actively investigate the trials that are available to them.

      about 9 years ago
    • TomLand's Avatar

      Yes - after diagnosis of Pancreatic cancer, stage 4 my new Oncologist told me about a study they had available. We searched the whole area on his computer to see what other centers had available - the first sounded the best. The study was Gemzar/Abraxane. I was randomized into the control group so I got only the Gemzar. The study was not blind so I knew what I was getting. I thought that would be a bad thing but it has turned out great. The Gemzar has worked wonders so far. My CA19-9 marker result was 218 I think when I started and was 53 a month ago. I have competed 2 series of Gemzar treatments in the study. If my scans and marker come out good I will probably start the third round next week - if it ain't broke don't fix it :)

      I believe studies are important in that they help others down the road one way or the other.

      about 9 years ago
    • ImStillHere's Avatar

      I am participating in a clinical trial right now, and I'm feeling pretty discouraged about it. It's a double blind trial, so 50% of people get a placebo, and 50% get the drug. It is a diabetes drug that has been around for decades, and shows great promise in preventing cancer recurrence.

      Initially it didn't matter to me whether I got the drug or the placebo because I thought I had been diagnosed with stage 3A breast cancer, which has a survival rate percentage somewhere in the 70s. I found out that I actually had stage 3B, which has a survival rate around 40%. I know I'm getting the placebo because I have had zero side effects, and everyone who takes this drug initially has stomach problems.

      I've asked my doctor and the study director if I could go off-protocol, and get the real drug for sure, but they won't do this since I'm not stage 4. I just feel very depressed about my chances for survival, and it's upsetting since the study regularly does various types genetic testing on me, and I am not allowed to see the results. I feel like the only value I have in this study is if I die. And it seems like all studies on breast cancer stages 1-3 are like this- always a double blind study in which you have a 50% chance of getting a placebo. It's just depressing that there is no sure way to take advantage of emerging treatments that could save my life.

      almost 9 years ago

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